A Patient Advocate’s Story

When we first started going to doctors appointments with my Mom after her Ovarian Cancer diagnosis, my sisters and I assumed that our role was to be an extra set of eyes and ears in the exam room. And that was true to some extent. Especially at the very beginning.

But over time we came to realize that a far more important contribution was being an extra set of eyes and ears between doctors’ appointments. Helping to make sure my Mom was taking her medications, and creating a schedule for those meds that worked for her. Helping make lists of things she wanted to discuss with her doctors, and jumping into the discussion when "chemo brain" set in and she couldn't remember anything from her list.

Some symptoms would come and go, and we wondered if there was a pattern or anything we could do to avoid or minimize them.

Others would bother her significantly for an extended period of time, but she never talked about them, so neither her family nor her doctors knew it was happening. This was especially true for bowel related symptoms, and things that she just didn't think were worth talking about.

My Mom had Cancer. She didn't want to be seen complaining about an itchy rash that wouldn't go away, or the fact that she could only sleep in one position without pain, or the fact that she had serious chronic constipation.

Advocate or Detective?

I came to realize that being an extra set of eyes and ears was the wrong metaphor, and that passive collection of what I could see and hear was the wrong approach. What my Mom needed was a detective who actively sought to discover something important from the available clues.

I started researching the side effects of all the medications she was taking, and learned everything I could about her Cancer and chemotherapy. Then I learned about the most common complications that a patient with a weakened immune system was susceptible to. I was making myself a list of things to not just watch for, but to investigate.

So when I asked her one day if she was constipated, which I'm sure we can all agree is an awkward question to ask your Mom, I was asking specifically because she had started taking a powerful opiate based pain medication a few weeks earlier.

It turns out that she was badly constipated, and had been for a month. I asked why she had never mentioned it to me, or her doctors, and she replied, "Honey, I'm not constipated because I have Cancer, I'm constipated because I'm old."

It’s amazing what you find when you know where to look

I opened my laptop and showed her that one of the top side-effects of her new pain medication was constipation, and explained that's why I had asked in the first place. She was overjoyed to learn that maybe this was something that could be "fixed" - that it wasn't just because she was old.

A quick telephone call with the doctor, and a trip to the pharmacy, and within 48 hours we had "fixed" that particular problem. And then we discovered how much it had been affecting her mood and her appetite, both of which we had noted, but had no idea what the underlying cause was or how easy it was to "fix."

You have to know what to look for if you really want to have an impact on care. You cannot count on the patient knowing what is important and being able to document and report it.